National Conference on ASD 2020 – Inauguration and Key Note

Hi All,

happened to attend the National Conference on “Recent Trends in the Interventional Approaches of Autism Spectrum Disorder” organized by CARE (Chettinad Academy of Research and Education) and NIEPMD (National Institute for Empowerment of Persons with Multiple Disabilities), it was held in “Chettinad Health City, Chennai” for two days i.e. 24th and 25th January 2020.
I have attended few workshops related to ASD, Sensory and Behavior aspects to gain knowledge and insights on how it would help my child, but this was my first time i am attending a conference as such.

Day 1 i.e. on 24th reached the place by 9:30 am, as the inaugural ceremony is supposed to begin by 10.am. The conference was held in the mini Auditorium inside the college campus. Happened to meet few occupational therapists who have worked with my son earlier. Since i have already registered for the session, marked my attendance and they gave a kit to all participants, containing a NCASD Souvenir Hard Copy, scrippling pad, pen, Niepmd pamphlet etc …

From what i could see most of the participants were students as it was a regular college day (i.e. friday), almost entire auditorium is filled by them. The Auditorium was spacious, with nice seating, mild music/song at the background being played during the waiting period. Conference began at 10:25 am, with Tamil Thai Vazhthu. Lighting of Lamp happened around 10:35 am, they asked a volunteer from the participant to be part of it as well, which was a nice gesture. (Almost all male members at the dais have removed their shoes in advance for the lighting ceremony, except for two women who lighted the lamp without removing their footwear…. I don’t know why i notice all these things …!!)

INAUGURAL SPEECH

Inaugural speech was given by people at the dais, few interesting information shared are:

Dr. T.Balasubramanian, Vice-Chancellor of Chettinadu Hospital and Research Institute (CHRI), spoke that even though the underlying cause of autism has still not been found, he shared his thought that the sharp increase in % of the married couples who are now undergoing IVF (In Vitro Fertilization), is causing such kids or not, is something we need to look in to.

Representative from NIEPMD mentioned that when they began their services in Chennai in the year of 2005 there was only one child at that time. Today we have a special school dedicated for Autistic kids, apart from which we meet 40-50 new children on a daily basis who avail services from various departments. They have also developed a new initiative called National level of Earlly intervention program where they offer 3 key services: Screening, Early Intervention and Prepardness for Pre School education.

Prof. P Jeyachandran of VHS (Vijay Human Services) was the impressive of the most people in the conference, his experience and knowledge and how we was able to articulate the message in a concise manner impressed me very much. He is considered as a mentor many psychologists in the country and outside, he is also called as Father of Special Education in India, which i would say is not exaggeration by any means. (Please read the article about him https://www.thehindu.com/features/downtown/four-decades-of-service-to-mentallychallenged/article6751457.ece)

• He mentioned that he has crossed 70 years of age and has been working in the field of disability for the past 52 years. During his post graduation days in 1966, he selected Autism as his project, the number of cases were so scarce, he has to travel to many hospitals to find a person with such diagnosis. He was managed to get one person finally from IMH (Institute of Mental health), whereas today at least 3 new children are getting diagnosed with Autism on a daily basis. In his project he has written that 1 in 10,000 will get autism whereas today the DSM 5 says 1 in 68. i am not sure, whether we are ready to meet the challenges.
• There is a big list of interventions and many therapies are available in the market, but based on the documented research from all of the nations, mentions that behavior modification gives the best result used with operant conditioning. For few individuals, other therapies might have helped but we should not generalize based on that. Dance will help you, Music will help you, Mud therapy will help you, Sports will help you, etc. it may be effective for that particular child, but by and large it has been found out that operand conditioning gives the best result.
• All over the world researches say that we can find out autism diagnosis on a child who is 2 years old, whereas in our village the mothers can say that child is different within few weeks of birth, from the way the child is sucking the milk or not sucking the milk properly or not. The relationship which the child establishes with the mother even during sucking the milk tells us the child is different.
• International statistics says 70-80% of children with autism becomes to be children with mental retardation. So if you make the diagnosis very clear, that child has MR or Intellectual disability and autism, you can plan for both. If you don’t plan the intervention and focus only on Autism, or Intellectual disability, you have to program for both. Only 30% of such children has average or above average intelligence.
• To all young psychologists his message is that “It is possible to make them part of the society like you and me. If they are failed to be part of the society it is not the fault of the child, it is the fault of the profession.”

Finally Chief Guest Dr.Rema Chandramohan, Director of ICH (Institute of Child Health) spoke that each and every child with autism is unique they do not present themselves in the same way. 100 years back autism was coined with a definition “Obsession with self”. During her post graduation days there was only a mere mention in the book about this condition, she never realized the huge increase in such condition, and she is also afraid that is it only going to increase further, as we are yet to find out the cause of it. She also said very clearly, that we are blaming it on a whole lot of factors like Changes in brain, MMR Vaccine, Parenting Styles, diet, pollution, etc, since we do not know the cause, and she assures that it is not caused by any of it.
She says that we can suspect autism for babies who are born with lower weight, babies born through IVF, pre-term baby where the brain is not developed 100%. It takes 40 full weeks for the brain to be treated as completed. In her clinic for Autism, she is seeing almost 100 new cases every month. She suggests that every child when reached 18 months, has to be screened for Autism. Tools like M chat or Indian screening tools shall be used. Do not wait in case of mild doubt, administer these tests as early as possible.
There is no need for a medication unless there is a co-morbid condition that is present. She suggests to include the mother in all early interventions as the mother would always feel that the child is blocking her out. Also we do not have enough therapists to deal the numerous cases which are on the rise, hence we are teaching the mother who will in turn train the child.
She also suggested everyone to read the book called “Curious incident of the Dog in the Night time”, by Mark Haddon which is about a 15 year old child with Asperger’s and one can exactly experience what an autism child is going through, their hypersensitiveness, extreme intelligence, etc. and it will also teach you to treat children with empathy.

KEY NOTE ADDRESS

Key note address was given by Prof and Dr.Sunil.K.Narayan, MBBS MD DM DNB PhD FRCP(UK) FEAN FAAN, Professory of Neurology – JIPMER (JAWAHARLAL INSTITUTE OF POSTGRADUATE MEDICAL EDUCATION AND RESEARCH). His presentation was highly technical with jargons only people in medical profession could understand, i am sharing bits and pieces of information which i heard:

1) ASD is a group of neuro-developmental condition that are characterized by some degree of “Impairment in social interaction, verbal and non verbal communication and difficulty in symbolic capacity and repetitive behaviors”

2) The only protocol followed currently for ASD diagnosis is the “qualitative behavioural assessment” by experts.

3) Male to Female ration is 4:1

4) Screening tools that can be used are Mchat (Modified Checklist for Autism in Toddlers) and Stat ((Screening Tool for Autism in Toddlers & Young Children)
Diagnostic tools = Childhood Autism Rating Scale (CARS). IQ assessment is done to categorize them as low functioning or high functioning.

5) Pathology:

• After 3 years, reduction in the growth of Cerebral Cortex
• Imbalance between Neuronal Generation and Elimination
• Cerebral dysplasia due to abnormal neurogenesis, maturation and migration of neurons
• High Neural density in prefrontal regions
• Macrocephaly also ascribed to increased dendrite size, number and abortization with an increased spine density in dendrites.
• Increased gap between corticol minicolumn
• A correlation exists between the development of higher order brain structures and on the onset of autistic symptoms
• A reduction in number of purkinje neurons within the autistic cerebellum
• Abnormally small and densely packed cells within the amygdala.
• Focal patches of disrupted expression in one or more of the cerebral cortical layers in the majority of brain samples from children with autism.

6) Diagnostic gold standards

ADI-R( Autism Diagnostic Interview-Revised ) and ADOS-G Autism Diagnostic Observation Schedule-Generic.

7) Red Flags

Common Red flags

• At 1 year – No babble, no gesture
• At 18 months – No words
• At 2 Years – Abnormal voice quality
• At 2.5 years – Only few single words
• At 3 years – Speaks largely
• At 5 years – Fluency

Socialization – Red flags

• Reduced eye contact
• Emotionally remote
• Absent social smile
• Social referencing
• Less attention to other kids

Adaptive skill – Red flags

• Short attention span, passive
• Non function play

Motor behavior – Red flags

• Hand flapping,
• Finger twiddling
• Rocking
• Toe walking

Sensory behavior – red flags

• Reduced reaction to sounds
• Lines up objects
• Has empty gaze

8) Most common Neuro-psychiatric abnormalities in Autism

• Intellectual disabilities
• ADHD
• Mood Disorder
• Psychosis and Seizeures
• Catatonia
• Epilepsy
• Sleep Disorder
• GIT (Gastrointestinal) disorders
• Metabolic disorder

9) Electroencephalogram or Spectral EEG:

• Spectral analysis is based on the Fourier theorem
• A Simple and brief non invasive method of analysis of digital EEG reflecting brain activity
• Fourier transformation is a mathematical operation that provides the frequency, amplitude.
• Power spectrum for different frequency bands were remarkably uniform for children with autism compared to the controlled group of children. Grossly brain of ASD child follows the anterior-posture gradient

10) Biomarker’s for autism – Lower levels of neuropeptide arginine vasopressin in the cerebrospinal fluid distinguished children with autism from those who did not have the condition

12) Research on Cerebral folate deficiency with development delay, autism and its response to folic acid, is a recent advancement.

I would post details of individual sessions taken by delegates as separate posts.

Regards,

Saranya and karthikeyan

karthiksaranyaparents@gmail.com